by Sarah | Aug 23, 2012 | All About Molly, Autism, Special Needs
[flickr id=”7665948176″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]The new school year began a week ago.
We didn’t get the early meeting with the teacher we’d expected.
We did get a phone call the day before. A 15-30 minute talk with her teacher about Molly and what to expect and where she should sit and what to expect and how she’d been at home (a bit bonkers in anticipation of the change). The call went well, I think we got things across and I liked her over the phone.
Molly has been…
Happy.
Busy (read: a bit ADD).
Talkative (?!!!?).
There hasn’t been (so far) any of the violent out-breaks of last year. No major throwing of fits. There’s a 7 year old’s attitude, but nothing in the extreme ranges.
I don’t know if its having a teacher with a different personality. Or now 2 years experience under her belt. Or what….
But so far so good.
Fingers crossed that it keeps up.
Now if only she hadn’t brought home the cold virus ~achoo~
by Sarah | Jul 16, 2012 | All About Kennedy, Hypotonia, Special Needs, Tibial Torsion
We have a lot on our plate.
Something is bound to slip.
Yes, we try to live beyond our labels, but it’s only through treatment of those labels that we manage to survive and keep going.
But really, with a child as unique as Kennedy, something was bound to slip. Or a couple of somethings.
The one thing we’ve let slide. The one that’s slipped through the cracks.
Is the one that used to consume me.
Despite the CF, the anger issues – this one thing consumed me. Physical Therapy, taping her legs, taking her to the orthopedist.
Tibial torsion – complicated by hypotonia. Pigeon toes to the layman.
As you can see by the above picture (it’s not the best picture of it, but all my others are lost in files) it used to be severe. Her right foot in casual standing turned all the way into her left. Her left turned in a wee bit too.
Every time we went to the ortho is was pushed off and shoved aside. The ‘age of correction’ (i.e. braces or surgery) got older and older (we started at 4, then 5, then 6, then 8) until I put ortho’s at the top of the list of doctors I didn’t like or trust. It got to the point where I ignore it.
We were told that it would “self-correct” that her muscles would naturally pull them out as she got older. When we pointed out the fact that she has truncal hypotonia so the muscles weren’t strong to begin with we were dismissed and told “I wouldn’t even do physical therapy, it’s pointless.”
Um…WHA?
Now she is 6 – one of the ages – and what’s it like now?
There’s been some self correction.
Not enough. We’ve ignored it to a point. With everything else going on, it’s easy to ignore.
Until a walk around the zoo gets her ‘tired’ very fast…and when you look down, the feet are turning in more and more the more tired she gets.
It’s still a problem for her.
She doesn’t have the stamina of her friends – and I’m not talking the lung stamina – I’m talking the muscle stamina.
I’m tired of being dismissed by ortho’s.
But when do we attack it again?
Or do we?
Do we keep ignoring it and hope it goes away?
by Sarah | Jul 2, 2012 | All About Erik, All About Molly, Autism, Special Needs
[flickr id=”7089103379″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Erik is in his 40’s now. Many years have passed since he’s had to live through school, classmates, the pressures of schoolwork.
But he still remembers.
The stress.
The desire to get away from chaos.
His ‘coping’ mechanism that gave kids a way to pick on him.
The “other”-ness he felt.
From day 1, Molly’s uncanny resemblance to her Dad has echoed in every picture, every look, every nuance and quirk.
It’s been both a source of great joy for him – and a source of great fear.
You never want your children to feel the pain you did.
And when you have one like Molly – one that struggles to express herself.
You don’t always know.
But sometimes you do.
You see it in her eyes.
You feel it in your heart.
Every day this past year I worried over Molly’s separation from her classmates.
It leaves me to wonder – how much does she know it? How much does she feel it? Will she remember when she’s in her 40’s? Or have we been able to spare her some of the pain? How long will these issues echo in her life, even with appropriate therapy?
The saving grace in her life is her sister.
Kennedy is the social butterfly to Molly’s cocooned existence. Kennedy relates to her when others can’t. For now, at least, Kennedy is her safe place.
If only we could keep her from beating the crap out of her safe place.
by Sarah | Jun 26, 2012 | All About Erik, Depression, Special Needs
[flickr id=”6293299563″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]The other week I talked about the thing we never talk about. My husband, Erik, who suffers from severe depression was in one of his darkest times when that happened.
He nudged the edge of the cliff, and action had to be taken.
Today he is feeling better – tired, but a few feet back from the cliff. I can’t go into details but we took steps to get him much needed help, and he is doing it. It isn’t easy and some days he wants nothing to do with it, but he is doing it.
I’m proud to say that he has taken steps he’s never taken before, and so have I.
Progress is slow, and it isn’t always clear. We inch along, but we are still moving forward.
As we adjust and learn more, and he grows more comfortable with it, hopefully we can share more of this process we are going through. Because as he improves I become more aware of things I need to step up and change as well.
Right now I can tell you that the biggest step we’ve made is going through this together. It’s making a world of difference.
by Sarah | Jun 14, 2012 | All About Erik, Crap, Depression, Special Needs
[flickr id=”6202967832″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]I talk freely about almost everything here. The kids, their ‘challenges’, my challenges, the days that I feel like giving up and the days of great joy.
There is one thing I never talk about – except in passing. The one subject I never dive into for numerous reasons.
My husband of almost ten years suffers from severe, often debilitating depression.
Most of the time we manage. I am the silver-lining girl. I push us forward, I find the light at the end of the tunnel for him.
But sometimes it overwhelms and consumes.
And one of those times is now.
Erik & I, despite living with this for 10 years, are now making the hardest push we have ever to tackle this.
Together.
So little by little you will see us both start to open up about this here.
When he is ready. When we are ready.
Until then, I only ask that you send good thoughts, positive energy, or prayers (whatever is your preference) in his direction. While we search for answers for the best possible course of action toward a positive future. A future he deserves after his incredibly long struggle.
by Sarah | Jun 12, 2012 | All About Molly, Autism, IEP, Special Needs
[flickr id=”5888385257″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]I’m pretty certain that I would not be remiss to say that the beginning of last years school year was a colossal failure. If we sat all involved parties down at the end of the day we would all agree that the road became more rocky than needed.
The school didn’t listen to us. Her teacher didn’t listen to us. Molly was unprepared for school starting again, unprepared for the new teacher…all of us were unprepared for all developments.
This year we’re putting the cart before the horse.
Before last year ended we talked to the principal to make sure we are prepared for the fall.
We will know who Molly’s teachers are before the school year starts. Molly will have a chance to meet her (her homeroom at least, if not all three teachers) before the school year starts.
More importantly, we will meet with them before the school year starts.
We won’t wait for “Meet the teacher” night. We won’t be ignored and told “Oh I don’t look at previous years”.
This year we will be heard.
We will cut the crap off at the past.
We will show that we learned from our mistakes – and force the school to learn too.
